PMR and pain levels

Posted by debbiebas216 @debbiebas216, Mar 7 10:45am

I was diagnosed with PMR the end of October. I’m presently taking
7 mg and on a tapering of 1 mg every 2 weeks. I have stiffness and pain (5-6 level) every morning but afternoons and evenings much better
(1-2). The side effects (weight gain, A1C levels up, heart palpitations etc) are worrisome, so I’ve decided to try and taper at the current rate until I’m off prednisone. I walk most days up to 2 miles and I’m mostly gluten free (my palpitations were much worse after having any breads). I started drinking electrolytes because I’m having some dehydration issues, which is helping. My rheumatologist is suggesting leflunomide but I will not go on that due to those side effects and I’d still need to tape off prednisone. I’ve tried Tylenol arthritis but was no help.
Looking for opinions on my mind set of just live with the morning pain and hopefully be able to get off the prednisone asap.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

jacobz06 | @jacobz06 | 4 days ago

In reply to @lindaadele "I have been on many medication‘s for my PMR. They work until they don’t work for..." + (show)

MTX took about 6 weeks to kick in. Weekly (self) injections, 1ml syringe.

lindaadele | @lindaadele | 3 days ago

In reply to @jacobz06 "MTX took about 6 weeks to kick in. Weekly (self) injections, 1ml syringe." + (show)

Thank you so very much for your information!!! I really appreciate it!!! I am going to try taking the MTX in the tablet form. is there a reason why you are not taking the MTX in the tablet form? So far I only took MTX last Wednesday. I did feel a little dizzy after taking the first two pills for about an hour or two. I figure I will take one day at a time and see how it works out. Thanks again! My very best wishes to you

lindaadele | @lindaadele | 3 days ago

In reply to @debbiebas216 "Yes, I’m having side effects too. Better now that I’m tapering and presently just started 6..." + (show)

I wish you the very best with your PMR. For me it’s no fun and quite frustrating. I’m just trying to take one day at a time and do the best I can do which is really quite difficult for me!!! wishing you the very best going forward!!!

prestol | @prestol | 3 days ago

In reply to @lindaadele "I wish you the very best with your PMR. For me it’s no fun and quite..." + (show)

Hi @lindaadele, after seven months on the tablet form of MTX, my new rheumatologist switched me to injectable. She says many people (30-40%) don’t adequately absorb the oral form, which also causes more GI side effects. So far I have had one injection, so we’ll see.

lindaadele | @lindaadele | 3 days ago

In reply to @prestol "Hi @lindaadele, after seven months on the tablet form of MTX, my new rheumatologist switched me..." + (show)

Thank you so very much for your information!!! Next time I see my rheumatologist I will certainly mention it to her depending on how I’m doing or not doing!!! my very best wishes to you!!!

jacobz06 | @jacobz06 | 2 days ago

In reply to @lindaadele "Thank you so very much for your information!!! I really appreciate it!!! I am going to..." + (show)

See this explanation from Prestol: "after seven months on the tablet form of MTX, my new rheumatologist switched me to injectable. She says many people (30-40%) don’t adequately absorb the oral form, which also causes more GI side effects. "

charlie24 | @charlie24 | 2 days ago

Good morning. My husband was diagnosed in 2018 and has never been able to stop prednisone. Is this unusual? Thank you!

joan7 | @joan7 | 1 day ago

What was the level of Predisone that you were started at when you were first being treated for the PMR? I was started at 40 mg and it took a year for me to be tapered off of it. It seemed the lower I went on the mgs of Prednisone, the slower I needed to taper off of it. It took a year before I could come off of it, but I worked closely the entire time with my Rheumatologist to manage my pain level. How long have you been tapering off the Prednisone? Sometimes if you come down off it too fast it, you can experience pain from the Prednisone withdrawal.

pdxmac | @pdxmac | 1 day ago

In reply to @lindaadele "Thank you so very much for your information!!! Next time I see my rheumatologist I will..." + (show)

I started MTX using the injections because I'm already susceptible to GI distress. My rheumatologist had me start at a lower dose and gradually increase to the full 0.8mL dose. I've been at that level for two weeks now and I can already feel a huge difference. Energy is back, sleep is better, etc. Given all the progress, my rheumatologist agrees I can speed up the pred taper too see how it goes.
I've also incorporated a lot of anti-inflammatory foods like berries, green tea, moringa powder, etc. and am avoiding foods that make it worse.
Good luck with your own experiments!

susanalka | @susanalka | 1 day ago

Hi @debbiebas216 , I am on a similar taper schedule, 8mg reducing 1mg every 4 weeks. I also have morning stiffness and some pain that mostly goes away once I’m up and active. I’ve always been very flexible but now can’t stretch my legs ( hamstrings) as far as I used to. I’ve thought about adding another 1mg to see if that helps. I’m reluctant to go backwards in the taper because it’s taken so long to get to this point. My PCP didn’t explain any of the ups and downs with me when I started prednisone. I guess she assumed I would contact her if I had any issues. I probably should have pressed her at the time but I was just happy to have a diagnosis that was obvious and a rather simple treatment plan. I’ve learned now there is nothing simple about this disease and the treatments. Good luck and keep us posted on your progress.